Alex Stobbs: Singing from his own hymn sheet

September 7, 2009 by
Health   No Comments Yet

When 19-year-old Cambridge undergraduate Alex Stobbs wakes up, like many of   his peers, he often struggles to get out of bed. But for Alex, that lack of   morning bounce has nothing to do with being a typical student – it is the   consequence of the 2,000-calorie night feed he will have ingested via a tube   inserted straight into his stomach. “I wake up feeling full,” he explains,   “so I don’t want to get up.”

This night-time feeding is part of a daily ritual, which includes 50-60   tablets, oxygen, and intense psychotherapy, that is keeping Alex alive. He has cystic fibrosis (CF), the most common life-threatening inherited   condition in the UK. Some 2.3 million Britons carry the gene and its   sufferers include Gordon Brown’s son Fraser. The disease affects the   pancreas and lungs by clogging them with thick mucus. Nineteen years of   steroid treatment have left Alex with osteoporosis, he has early signs of   liver disease, and lung infections have resulted in more than 60 hospital   admissions. But he refuses to let his condition get in the way of pursuing   his dreams. As a member of King’s College Choir, Alex sings at seven public church   services a week, all of which require an hour’s practise beforehand. He is   also part of a choral group called Collegium Regale, which performs all over   the country. Last spring, he conducted Bach’s St Matthew Passion at the   Cadogan Hall in London – and of course there is his degree in music which he   admits is “hard work”.

Alex is a brilliant musician who first came to public attention as the subject   of a Bafta-winning Channel 4 documentary, A Boy called Alex, which told the   story of his battle to fulfil his dream of conducting Bach’s Magnificat. He   has now somehow found the time to write a book, A Passion for Living, based   on a year in his life, in the hope of generating awareness of and research   into CF.

“Like a lot of people who live with ill-health, I’m quite driven, determined,   and – dare I say it – very stubborn at times,” he says. “I have always seen   difficult things as a challenge rather than an obstacle, and I just have to   prove myself. Nothing gives me more satisfaction than being able to say ‘I   did it’ and prove the doubters wrong. I’m not the kind of person to be   cautious or give in; I want to show others that having CF doesn’t mean   sitting around feeling sorry for yourself. I get very tired but I prefer to   be doing too much than too little.”

Alex’s illness was diagnosed at seven weeks old. His mother Suzanne, a   51-year-old piano teacher, confirms there was little surprise for any of the   family; she and husband Timothy, 55, a reinsurance technician, had realised   that their fourth child was sickly, distressed and slow to gain weight.

Doctors explained that due to a genetic fault, and for reasons not yet fully   understood, his body produces too much mucous, and cannot clear it. It is   vital to keep Alex’s lungs clear through physiotherapy, and the   administration of steroids to strengthen them. Too much mucous causes chest   infections which permanently damage the lungs – the biggest threat to a   sufferer’s health. Infections must also be dealt with quickly, with   intravenous antibiotics administered in hospital.

Alex is remarkably matter of fact about his illness. There is never a time   when it wasn’t a part of his life. “I don’t recall thinking ‘bloody hell,   I’ve got this’ – it has all been normal to me,” he says. “I remember going   to hospital a lot when I was quite young – they are fond memories,” he says   with a laugh. “I was always treated to a bar of chocolate from the hospital   shop so that I would feel better about having needles stuck in me.”

But it was singing from the age of seven that proved not only to be a passion   for Alex, but also beneficial for his condition. “Singing opens up the   airwaves; it is like a form of physiotherapy as it works the muscles of the   chest.”

His whole family, who come from Kent, is musical. He is one of four siblings;   Alex, like his sister Miranda, now 23, and brothers Christian, 22, and   Patrick, 21, won scholarships to prep school and then public school. Patrick   and Alex were choristers at King’s College Cambridge, and all went on to be   music scholars at Eton. Miranda won a scholarship to Benenden for music.

“When I went to prep school, I was very annoyed that I couldn’t play rugby or   go on cross-country runs, but I could do cricket” says Alex. CF sufferers   typically don’t have much stamina and avoid contact sports for risk of   infection, He played for the under-10s at county level.

At Eton, Alex had a nurse assigned to him part-time, after he had to undergo a   gastrostomy, when the tube to receive overnight feeds was inserted into his   stomach. (He also has a Port-A-Cath in his chest, a permanent opening for   the delivery of antibiotic drugs to treat infections, so that he can remain   an outpatient whenever possible).

But he didn’t find fitting in at Eton to be a problem. He became house captain   of cricket and played the organ, piano and harpsichord. He decided not to   make his condition public among his peers. Many thought he suffered from   asthma.

His routine has not got easier as he has got older. He must fit in three 15-20   minute sessions of physiotherapy a day, remember to take up to 60 tablets,   inhale a mixture of enzymes, antibiotics, steroids and vitamins, and get   plenty of rest so that he doesn’t get a serious chest infection.

“Now I sing seven services a week it really makes a huge amount of difference   to how I feel. My voice does get hoarse but I love it too much to stop   anyway,” he says. Because of his condition Alex has to follow a different   breathing pattern to the rest of the male singers. “I need more breaths than   my colleagues, but I’ve worked out a system that doesn’t affect the sound   and I am getting better at it.”

There is no cure for CF, and Alex’s best hope will lie in a heart and lung   transplant when his lungs become too scarred to work properly (the heart is   incidental; it is transplanted simply because the lungs cannot be moved   safely from one patient to another without it). A consortium of British   scientists brought together by the CF Trust, however, is working on a gene   therapy and research is advanced and encouraging. The first clinical trial   in adults began in February this year and is due to end this month.

Yet, Alex refuses to slow down. He is helped enormously by King’s, which has   settled him into an adapted flat in the same block as his elder brother   Patrick, who still helps with his physiotherapy. To help him get around he   rides an electric scooter. His mother comes up twice a week to deliver   home-cooked food.

“I know all I need to about CF and I do listen to the doctors but I am very   happy with the knowledge I have. I don’t want to hear the negatives. I’m not   interested in seeing the latest scan of my lungs – I know how bad it will   be.” And then he is off to his whirl of music and college life. “Time is so   precious,” he says. He, more than anyone, knows the truth of that.

[youtube]http://youtu.be/COi_z5EUypA[/youtube]

‘A Passion For Living’ by Alex Stobbs will be published by Hodder and   Stoughton on September 17; all royalties will go to the Cystic Fibrosis   Trust.

About the Author

Victoria Lambert has been a journalist for more than 20 years, and specialises in health and medical matters. She writes for the Telegraph, the Times, the Sunday Times, the Guardian, the Mail and the Mail on Sunday. She contributes to Saga, Geographical and First Eleven magazines – where she is the agony aunt.

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